My Illness Defines Me (and why that makes me happier than you)

My illness defines me. But it wasn’t always that way. What I didn’t realize on April 16, 2002, the day I was diagnosed with a severe form of Inflammatory Bowel Disease, was that I was not only forced into a quite unwelcome BFF relationship with my illness, but that I would literally need to relearn every instinct, every emotion and the entirety of my sense of purpose in order to survive. Lifelong goals were replaced with a new reality while a previously untainted sense of confidence was replaced with incontinence, pain and fear. It was nearly a decade before I woke up from my nightmare. I like to think of that day as a rebirth of my mind. That day was March 15, 2011: it was the day I almost died.

A team of doctors and nurses saved me that day, literally returning air to my lungs and life to my body. But that was really just the beginning. Within two weeks, I found myself in a PACU, once again rising from the dead after a nearly five-hour long surgery to remove my large intestine, rectum and create an ileostomy bag that would recreate a new way of life for me. It’s been more than five years since that first surgery, and my illness has only become more complex. I’ve found myself in the OR for major surgical interventions seven times since that day, and have spent months of my life hooked up to IVs and machines. The hospital has become a second home; the nurses and doctors my new best friends. But something has also happened since that day, something that I didn’t see coming: I began to feel like the luckiest girl alive.

Some of you reading this will just know what I mean because you, too, walk this walk and talk this talk. But for those of you able-bodied friends out there, I’m going to try to do something impossible. I’m going to give you just a few examples of many, in an effort to convince you of why I would never trade my life for yours:

 

  1. Despite all of the ugliness in the world, I still believe in the compassionate nature of the human condition. Last week, I sat in a room with three doctors and three nurses as we watched some of my unborn baby’s last moments on an ultrasound screen. It was my first time meeting most of them, yet every last person in that room shed tears right along with me, and embraced me like I’ve known them my entire life. My experience became theirs, too, as they transformed the most heartbreaking moment of my life into a moment I will never want to forget. It was just one moment of many: the time my surgeon cried in my hospital bed as he disclosed yet another post-operative complication, or the time my nurse took her day off to visit me in a hospital that was far from the one where she worked. These people have torn off their armor and have shown me their bare emotions; through my pain I have seen their compassion and through my weakness, they have showed me their humanity.

    the author, 3 months post-op, 10 days pre-op

    the author, 3 months post-op, 10 days pre-op

  2. It’s terribly difficult to have a bad day. Oh, they do happen. More often than I’d like. But in the midst of a storm, no one looks for more rain. When you have days that are so bad, so trying, and so dark, everything seems bright in comparison. I wake up every morning having not a single clue as to whether my day will end on my couch, snuggling my daughter, or in a hospital bed, pleading for a reprieve from my pain. It’s my how, my why, and my what: how each time I wake up in a PACU I spend that day experiencing the deepest kind of gratitude for the existence of the intervention I just received. Why every morning that my daughter wakes up and runs into my arms, a tear of pure joyfulness drips down my cheek. My illness is what transformed my life from one of insatiable searching to one of unthinkable fulfillment.
  3. I live in a perpetual state of fearlessness. I spent much of my life being confused by the “pain scale,” never knowing how to accurately assess my level of discomfort when “10/10” was a complete mystery to me. I would think about bee stings, or stubbing my toe, and would wonder if those few seconds when I would inevitable scream, “F*%*!,” could define the top of the scale. Well the moment I met that number 10, I knew. But there were a few things so much more important that I learned from my 10/10 experiences: 1. The mind always forgets physical pain. 2. Thanks to modern medicine and pain management teams, 10/10 physical pain is not something you will experience for too long. 3. You realize there is something far worse than death, and death is no longer your worst fear.

In these days where I wake up unsure of where my day will take me physically, I have become in almost complete control of where it will take me emotionally. A kiss from my daughter has become the “old me” equivalent of a perfect SAT score (which I never attained, and which speaks to my point). A drive in the car with the windows rolled down often feels like a sunset sail on turquoise seas. And a bite of my favorite food can bring a smile to my face larger and wiser than the one painted on that face of a girl getting a much-desired 3K diamond engagement ring.

If I could try, perhaps in vain, to explain myself succinctly I would tell you this: the little things have become my everything. And my everything is so much less, yet so much greater than yours.

  4 comments for “My Illness Defines Me (and why that makes me happier than you)

  1. Alex M
    June 15, 2016 at 5:38 pm

    I’m so glad to have found your blog. I was diagnosed with Crohn’s in 2007 and while I have never experienced some of the things you have, we are very similar in our views regarding this disease. I live with a “things can always be worse” attitude and agree that there is no point in looking for more rain.

  2. maggie
    June 16, 2016 at 5:17 am

    we are no longer alone

  3. June 16, 2016 at 7:34 am

    I love this, finding the positives in your illness can ve tough but it’s amazing when you do. I’m glad you have, I’m glad you’ve found happiness despite your pain and many others still struggle.

  4. June 22, 2016 at 2:43 am

    I know exactly what you mean! I have been going through some severe GI episodes in the past few months and was just telling someone the other day that during those times of respite when my stomach stabilizes and I can eat I enjoy my food so much more and make full use of it while I can.

    And it is so deeply appreciated when someone I meet in the course of my medical situation shows me kindness and compassion.

    Connection has a richer quality to it when it does happen nowadays.

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